Returning genome sequences to research participants: Policy and practice [version 1; referees: 2 approved]
Despite advances in genomic science stimulating an explosion of literature around returning health-related findings, the possibility of returning entire genome sequences to individual research participants has not been widely considered. Through direct involvement in large-scale translational genomi...
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doaj-d2a3a6f3ac27441f8727d6d6040bc5c62020-11-24T23:02:54ZengWellcomeWellcome Open Research2398-502X2017-02-01210.12688/wellcomeopenres.10942.111795Returning genome sequences to research participants: Policy and practice [version 1; referees: 2 approved]Caroline F. Wright0Anna Middleton1Jeffrey C. Barrett2Helen V. Firth3David R. FitzPatrick4Matthew E. Hurles5Michael Parker6Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SA, UKWellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SA, UKWellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SA, UKEast Anglian Medical Genetics Service, Cambridge University Hospitals NHS Foundation Trust, Cambridge Biomedical Campus, Cambridge, CB2 0QQ, UKMRC Human Genetics Unit, MRC IGMM, University of Edinburgh, Western General Hospital, Edinburgh, EH4 2XU, UKWellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SA, UKThe Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, OX3 7LF, UKDespite advances in genomic science stimulating an explosion of literature around returning health-related findings, the possibility of returning entire genome sequences to individual research participants has not been widely considered. Through direct involvement in large-scale translational genomics studies, we have identified a number of logistical challenges that would need to be overcome prior to returning individual genome sequence data, including verifying that the data belong to the requestor and providing appropriate informatics support. In addition, we identify a number of ethico-legal issues that require careful consideration, including returning data to family members, mitigating against unintended consequences, and ensuring appropriate governance. Finally, recognising that there is an opportunity cost to addressing these issues, we make some specific pragmatic suggestions for studies that are considering whether to share individual genomic datasets with individual study participants. If data are shared, research should be undertaken into the personal, familial and societal impact of receiving individual genome sequence data.https://wellcomeopenresearch.org/articles/2-15/v1GenomicsScience & Medical Policies |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Caroline F. Wright Anna Middleton Jeffrey C. Barrett Helen V. Firth David R. FitzPatrick Matthew E. Hurles Michael Parker |
spellingShingle |
Caroline F. Wright Anna Middleton Jeffrey C. Barrett Helen V. Firth David R. FitzPatrick Matthew E. Hurles Michael Parker Returning genome sequences to research participants: Policy and practice [version 1; referees: 2 approved] Wellcome Open Research Genomics Science & Medical Policies |
author_facet |
Caroline F. Wright Anna Middleton Jeffrey C. Barrett Helen V. Firth David R. FitzPatrick Matthew E. Hurles Michael Parker |
author_sort |
Caroline F. Wright |
title |
Returning genome sequences to research participants: Policy and practice [version 1; referees: 2 approved] |
title_short |
Returning genome sequences to research participants: Policy and practice [version 1; referees: 2 approved] |
title_full |
Returning genome sequences to research participants: Policy and practice [version 1; referees: 2 approved] |
title_fullStr |
Returning genome sequences to research participants: Policy and practice [version 1; referees: 2 approved] |
title_full_unstemmed |
Returning genome sequences to research participants: Policy and practice [version 1; referees: 2 approved] |
title_sort |
returning genome sequences to research participants: policy and practice [version 1; referees: 2 approved] |
publisher |
Wellcome |
series |
Wellcome Open Research |
issn |
2398-502X |
publishDate |
2017-02-01 |
description |
Despite advances in genomic science stimulating an explosion of literature around returning health-related findings, the possibility of returning entire genome sequences to individual research participants has not been widely considered. Through direct involvement in large-scale translational genomics studies, we have identified a number of logistical challenges that would need to be overcome prior to returning individual genome sequence data, including verifying that the data belong to the requestor and providing appropriate informatics support. In addition, we identify a number of ethico-legal issues that require careful consideration, including returning data to family members, mitigating against unintended consequences, and ensuring appropriate governance. Finally, recognising that there is an opportunity cost to addressing these issues, we make some specific pragmatic suggestions for studies that are considering whether to share individual genomic datasets with individual study participants. If data are shared, research should be undertaken into the personal, familial and societal impact of receiving individual genome sequence data. |
topic |
Genomics Science & Medical Policies |
url |
https://wellcomeopenresearch.org/articles/2-15/v1 |
work_keys_str_mv |
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